Our youngest sons, Simeon (Eon) and Bogdan (Bo), have Down syndrome or Trisomy 21. This is their story.
Friday, June 12, 2015
I'm Tired of Holland and I Want to Go Home
One of the first things presented to us after the birth of Eon was Emily Perl Kingsley’s famed essay, Welcome to Holland.I was touched by the sentiment, but never a huge fan of the piece. Basically, it likens having a baby with special needs to planning a special trip to Italy, and then being diverted to Holland forever. It acknowledges the grief associated with the change in plans, but points out that Holland, while not Italy, has its own unique beauty.
I hadn’t thought about the Holland analogy in years until a friend who’s getting ready to adopt a baby with Down syndrome re-posted it in her blog. It, of course, caused me to reflect.
Eon was healthy. He’s also number six of our eight children, so we were pretty seasoned as parents. We didn’t really experience the grief so many do when they embark on this journey. We entered Holland and immediately moved to the peaceful and beautiful countryside to skip among the tulips. Sure, there was the occasional language or cultural barrier to navigate, but it wasn’t anything we couldn’t handle and I was more than prepared to take it all head on.
I feel as if we moved from the placid countryside of Holland into the capital city and right into the heart of gang wars. (My apologies to the actual country of Holland. I have no idea if you even have gangs.)
I’m tired. No, scratch that. I’m exhausted. I don’t want to learn more of the language, or suffer from the loneliness of not fitting in, or eat foods foreign to me. I don’t want to walk about and listen to people jabbering in another tongue. I don’t want to shield my children from enemy fire. I don’t want to duck and run for cover or cower every time I hear a loud noise.
I’m tired of Holland and I want to go home.
I long for the familiar, the comfortable, the easy. I miss the days of doing things without thought. I want to take my boys to normalcy.
I hate that I have to know the Individuals with Disabilities Education Act in its entirety just to make sure my sons are afforded the educational environment that is lawfully due them. It frustrates me to have to spend hours in research prepping for a new specialist appointment to ensure the doctor orders the correct tests and medications or to point him in the right direction of the likely diagnosis. The adrenaline surge experienced every time an older child exits the house and the alarm sounds leaves me in a constant state of high alert, terrified that this may be the time Bo escapes with tragic results.
I wish I could trust anyone besides his ever-busy oldest siblings to watch the Serb, and even then, I wish it were for longer than an hour or two if during waking hours. (And still my constant checking in drives them batty.) I, selfishly I suppose, want to go to weddings and parties with my handsome husband instead of the carefully planned divide and conquer routine we’ve orchestrated for social engagements. I’m tired of packing a diaper bag when my youngest is a typically-developing, fully potty-trained four-year-old.
I hate that I freak out over every green snotty nose wondering if my weekend plans are safe or if I should go ahead and pack a hospital bag, just in case. I’m frustrated when my son tries five times to tell me something and I hear the same unintelligible sound five times and I just don’t understand and he gives up and whatever was important to him at the time stays with him and our moment to connect is lost.
But mostly, I’m tired of interpreting our world to others who don’t live here. It literally pains me to feel my boys have been devalued, either by a stupid social media comment, rude stare at the grocery, or casual remark by a close friend. I hate feeling like I have to be positive all the time or someone may not understand that, while my life is hard, I would choose these boys a hundred times over.
Holland sucks, sometimes.Yes, Emily Pearl Kingsley, it does have windmills, but where do you find the time to look up and enjoy them?
I have a choice to make. Sometimes daily, sometimes just when I hear the bullets flying and I find myself ducking for cover, longing for the good old days of home. I can wallow in the hard. I can live in the frustration and the difficult, becoming bitter.
Or I can embrace the adventure of a life uncommonly lived. I can relish in my daily opportunities for growth and new experiences. I can be overwhelmed with the beauty of relationships I have that others pass by. There is community among the ex-pats of metaphorical Holland. The marginalized have a camaraderie all our own.
If I hadn’t landed here, I would still be living in my fishbowl of sameness, loving all the people who live and think like me. I would never have learned the stories of my fellow sojourners, come to value their perspectives, share their pain. I’ve found that it’s not just the parents of kids with special needs who land here. This Holland is a home to not just those with a physical or intellectual disability, but also people of color, or those with mental illness, even the LGBT community, any of us who are different than the accepted masses.
Because there is a place for us here.
So, in the middle of my longing for normalcy, for what I remember home to feel like, do I really want to give up all I’ve gained, all I’ve learned, all I’ve become?
Not really. For I’ve discovered the true melting pot is Holland and here, there is grace for us all.